A Matter of Perspective

A conversation that I recently had:

Pharmacist:  You are on only two medications! That’s amazing!! 

Me: Actually, it’s three. 

Pharmacist:  ????  Two.  

Me:  Don’t forget the Insulin. 

Pharmacist:   Oh, right!!! But you are like a rock star diabetic! Nobody is on just two meds! 

Now, it did feel good to be called a rock star diabetic. Because nobody has ever EVER called me that. 

Credit: Valerei

This conversation came 26 years - almost 10,000 days - after my diagnosis, and it did make me feel kind of warm and fuzzy inside. But I would bet there are lots of PWD - People With Diabetes - who are not on other meds, like children for example. But I’m not going to argue that point. 

Because what strikes me is this:

Has insulin become so ubiquitous in our culture, that it is no longer seen as a medication with its own challenges? 

Is this why people shrug diabetes off? Is it why people tend to think that all you need to do is eat well, take your insulin, take your meds, and all will be well? 

Does it take a diagnosis of diabetes, and living with diabetes for a while to understand that insulin is not a cure? That even with the modern advances of better insulins and technology, that there are still many challenges for those who inject or pump it everyday?

Insulin is not a cure, and it is not easy to manage. But I do my best to manage it. Every day. 

And that makes me a Rock Star. And if you are a Person With Diabetes, that makes you a Rock Star too. 

So when you're not feeling much like a Rock Star, and it will happen from time to time, remember that it's a matter of perspective.

When it rains, look for rainbows

When it's dark, look for stars

                                               
                                                                          Esther Comau

The waiting game

So I've been waiting. I continue to wait. I've been playing a waiting game.

Artist Credit: Sian Storey

I also want to be high. No, I'm not a junkie. Unless you count insulin as my drug of choice. This is one of the requirements of this waiting game.

But the high I'm referring to is for my blood sugar levels.

Now you're thinking, that doesn't make sense. Who wants to be high? Doctors and medical professionals everywhere warn of the perils that manifest themselves when your blood sugars are high.

Mythbusting alert: sometimes complications can manifest themselves despite good management of blood sugars.

Now I'm not saying that I want to be in the stupid high range. High-normal range is good enough. I just don't want to slide into low territory, for this may have a price that I'm not willing to bear - which is the ability to drive for months to come.

So let me tell you a story. It's not a pretty one, and I'll try not to bore you with the extraneous details.

Back in June, I had a driving "incident". Or maybe I should call it an "event". Whatever it was, I had a devastatingly low (blood sugar) while I was driving. Although I didn't test immediately before driving, I wasn't thinking (mistake #1) because I was high not 1 hour before.

Now I did bolus at the time, however my history had been that once high, I tended to be stuck there. However what transpired was a perfect storm of a (possible) misbehaving pump (the manufacturer subsequently replaced the pump due to some "inconsistencies"), a misbehaving pancreas, and hypoglycemic unawareness. Perfect. While the manufacturer immediately replaced the pump, I just wish the rest was as easy to replace.

As I am here today, writing this blog post, and the fact that many of you have seen me out and about the interwebs, it has had a good ending. I wasn't hurt, no one else was hurt, there was no damage to our brand new car or anything else. This just created a tremendous concern that something had to be fixed, so I spoke to my medical team.

And, subsequently the event was reported to the Ministry of Transportation by my endocrinologist, and my license was suspended. I shared my story with her in the hope that she could help this from happening again. Silly me, for I discovered that telling the truth about what happened only served to take a tremendous toll on me and on our family.

The loss of my license has changed how I conduct my life. We live in a small town with no public transit, this has been problematic. The train that I take to get to work everyday is on the other side of town. Too far to walk. I now rely on my daughter, my friends, my neighbours, and yes, I'm walking a lot more. That is good, however, it has been a tremendous loss of independence.

It is important to me to restore life the way it was. Except for that driving while low part. I have a spiffy new pump/CGM (continuous glucose monitor) combo that tells me all about my lows, and will even suspend insulin if I ever do go low… not that I expect to given the fact that I will act immediately upon hearing such low alarms.

Well, this is where it gets kind of murky. The Ministry requires my endo to report a bunch of stuff about me, including all lows, over the course of 30 days.

So what is low according to the Ministry? Well, the number of incidents of 4.0 mmol (72 mg) or less must be reported. No regard for time of day - just how many. No explanation that something happened while cutting the grass or vacuuming the house. So I think that if I just stay on the high side for one month, that will be good enough.

Unfortunately, it appears that my DTeam and I are on different pages. On 3 separate occasions, adjustments to my pump settings have actually resulted in lows. I realized none-too-quickly that my team was making adjustments to my basals based on my CGM data. Everyone (except my team apparently) knows that you don't do this. It reports trends, but it is far from perfect. This is a CGM newbie mistake. I shared with my team. However, there was no apology and no accountability.

So will my numbers be strong enough to report them to the Ministry? Only my endo will be able to determine this at my appointment next week. And if she submits it, I will wait for 6 weeks to hear back from the Ministry. If not, I guess the 30 days could start again. All going well, I might have my license back in time to visit family for Christmas. If not, well...

The good news is that I now have a pump/CGM system that will help me to manage this stupid disease better. That's a good thing. I know this.

So in the end, I continue to wait. I've been lining up my ducks, getting them all in a row. And now I'll wait some more.

She's got a name!

Her name is Rosie. 

She stays by my side at all times. She is a Type Awesome* in my life. 

She:

Suggests...

Reminds...

Pokes...

Prods...

Jogs my memory...

Nags...

Admonishes (but only when I'm ignoring her)...

Doesn't judge...

Looks out for me...

Tells me what my blood sugar is doing and what I can expect.

Rosie is my robot - my artificial pancreas - a Medtronic Paradigm Veo. She is an Insulin Pump and, along with her transmitter, she is Continuous Glucose Monitor (CGM). The transmitter communicates my blood glucose to Rosie, and tells me what's going on. She tells me when I need to do something.

Have I tested lately? Double arrows up? Perhaps I need more insulin, perhaps I guessed my carbs wrong... maybe my site has gone south. Double arrows down? Better test. Maybe I need a snack. But what she's telling me is that I better do something about it. I admit, perhaps she is a little overzealous about her job, and perhaps not perfect, but who is?

What won't Rosie do? She won't get me juice when my blood sugar goes low, do my housework and she doesn't cook.

I'm sure I can look forward to some new added features in a future firmware update.

*Type Awesomes are those individuals forming an invaluable support network for People Living With Diabetes. 

What's Your Type

Personally, I can do without Wilfred and his constant badgering about Quaker oats. Enough about the oats alreay! Larry finds this particularly funny, and I had to send the link directly to him (I guess so he can play it anytime he needs a pick-me-up). But whether you like Wilfred or not, you gotta love this one:


Diabetes is in the news - a lot. Type 2 is the new "in" disease. Our doctors and the media are telling us that we have sedentary lifestyles, get fat, we are at risk of getting this disease. In the U.S. 8% of the population has Type 2, and many more are undiagnosed.

Type 2 is a genetic-related disease, generally speaking, often brought on by choice of lifestyle. Only 10% of those diagnosed with the disease are Type 1, otherwise known as insulin dependent, or juvenile diabetes (I swear, I am not juvenile!)

I've noticed that the media has been offering many poorly researched articles and ads by companies wanting to sell the latest weight loss program - and the implication (and sometimes in part stated outwardly), that is Type 2 happens to fat and lazy people. Just lose the weight, exercise a bit, and you'll be fine. Commercially, this phenomenon is a boon to the weight loss industry. Lose weight, you can look great, and be all better! Isn't life just so simple?

The media rarely talks about Type 1, except in hushed tones as it talks about poor Timmy who's only treatment is to take insulin. If Timmy says he has Type 1, adults give Timmy a new respect, because after all, poor Timmy has to take NEEDLES!! (actually many T1s, including kids, use insulin pumps - needles are so 'old school'). But the implication is that, if you have T1, you have a "real" disease.

Now if you have been diagnosed as having T2, the implication is that you must be fat and lazy. The fact is, we are all a product of the diseases we have, and we need to deal with the disease as it affects us.

But let's take a right turn for a moment, and talk about cancer (I'll get back to diabetes in a moment, just bear with me). Now just about everyone knows someone in their family who has cancer. But is there a difference, for example, if you got cancer due to exposure to asbestos or whether you got it because it's in your family? It's still cancer. Causes, treatments, impacts on quality of life and survivalrates may vary, but it is still cancer, and a life threatening disease.

Both T1/T2 diabetes is serious, regardless of why someone has it. It is up to our doctors to determine the appropriate course of action and treatment based on our own medical conditions and set of circumstances, and it is up to the person with the disease to keep on top of things.

If you, a friend, or someone in your family has, or is diagnosed with diabetes, they are part of a growing crowd of people with this disease. But just because there's a big crowd of people, don't assume that all people with diabetes are the same, after all, this disease is so much more than just saying no to the piece of cake.

Contributed by Jamie Naessens

Here We Go Again

I know I've been letting my fans down - I have approximately 6 fans after all, and I virtually disappeared without a trace! I'm back now though, although maybe with not the same frequency until I can get life under control.

There's been a lot on the go here, and if you are one of those who look forward to my posts, please accept my apologies. And if you are seeing me here for the first time, I'm sure it isn't a problem at all.

At the moment, Penny is sick again, and it's probably the pancreatitis acting up again. Last week while walking, she deaked out to the side, and we heard the ominous 'crunch crunch'. Just a couple, and the first thing I did was reach down her throat to retrieve whatever crunched. To no avail.

So the waiting game began, and she did pretty good until yesterday, when we had to take her off all food - but she's drinking. But not doing well. She's still struggling through it so far, without needing to go to the Doggie ER, but she's a sad puppy and we're sad owners. And tomorrow we're off to our vet.

And it seems that no one around here can stay healthy either.

As you may know from some of my other posts, I have Type 1 diabetes, and now Larry has been struggling with his own recent diagnosis of Type 2. You know I thought I knew all I needed to know about this - after all I've been dealing the better part of 20 years. And now that I've recently started using an insulin pump, I've had greater control and flexibility.

But I've discovered that I don't know as much as I thought. Type 2 is similar, but it is indeed quite different in how it behaves, both in the body and in diet restrictions. Who knew!

There's an irony here... somewhere, and I think in more ways than one. But I'm not looking too hard. When I find it, I'll certainly share.

Contributed by Jamie Naessens

Down the Rabbit Hole

There are no stupid questions, just stupid people.

I was stupid today. But even if I'm stupid, it seems there are others out there even more challenged than I am.

Ever have a conversation with someone and wonder if you'd somehow landed at the Mad Hatter's Tea Party?

First let me set this up. For those of you who don't know, I have Type 1 diabetes, use an insulin pump, and test my blood several times a day. When I tested at lunchtime, for some reason, there was still an old test strip sticking out of the meter from my last test. It didn't register with me that I should have put in a new one to get a new test. So I stuck my finger to get the blood, and applied it to the old used strip. If this happened to any one of a number of other meters that I have, I'd get an error.

Countdown 5 - 4 - 3 - 2 - 1, and then the result displayed. It was not the error code that it should have displayed, but it was a number that I knew could not be. (A small problem, because that number automatically registers in my pump, which is what the pump bases my next dose on. Lucky for me, the pump forgets this number after awhile.) Anyway, it was an oops.

Being the curious sort that I am, I tested 3 more times with some old strips that were still hanging around my kit, just to see what would happen - an experiment of sorts. The second test gave me another impossible number. The third gave me an error code, and the fourth, another number.

So I thought I'd call the pump people to tell them.

Anyway, they never heard of such a thing, said they would report this to the people that care there. After a fashion, I ended up being transferred to the meter manufacturer, a different company, to let them know about this curious and mysterious issue.

This is the conversation, more or less:

Me: I was really silly, made a mistake, and used an old test strip by mistake. I'd never do this normally, and I expected an error, but it gave me a result. Just to make sure, I tried 3 more times, and got the error only once. Shouldn't I get an error every time?

Her: You should never re-use a test strip.

Me (in my head): Well, duh. I know, that was part of my preamble.

Me: Yes, I know. I'd never normally do that. My concern is that it didn't give me an error, except for once, and I thought you should know about this issue, just for the record. Also, I certainly won't be doing that again.

Her: You know, you should never re-use a test strip. The results would not be reliable.

Me: Umm, sure.

Well, the conversation went on from there, but she didn't waver from her mission to make sure that I understood, under no uncertain terms, that I shouldn't have done that. In the end, she did offer to send me another meter, at no charge.

Well, thank you, I'm sure. I guess case closed. That was worthwhile.

Contributed by Jamie Naessens

It's Not A Pager

Insulin pumps rule!!! Or the flip side of that coin, diabetes sucks.

I've had Type 1, or "juvenile" diabetes for 18 years now. It's been a challenge to chase after the ever-elusive "perfect control" that doctors talk about. Personally I don't think perfect control is possible, but the pump lets in a glimmer of hope.

Type 1 means that you are stuck using insulin. There are no diets or meds that will do the job. Insulin is the only choice. Although insulin treatments have improved options over the years, with multi-injection therapies, it's been a challenge to harness all those high numbers, and get them into some semblance of control.

But now I'm one of the lucky ones.

I've had this since I was 28 years old, and have just recently started using an insulin pump. The pump delivers a steady stream of insulin through a small tube. I can program it to give more insulin at certain times of the day, or less. I can press a button to give myself more insulin at mealtime, or if I want that donut. All I have to do is enter the number of carbs, and the "wizard" in the pump figures out how much insulin to deliver, and a push of the button will start the delivery.

My meter, that measures blood glucose, will even nag me when it's time to test, and send the result to my pump. Pretty cool, if you ask me. It's not perfect, but it's better than before. I don't have to haul out my equipment at every meal, and make like a junkie with my drugs.

There are a few trade offs... in that I'm attached to the pump almost all of the time. It's hooked to my pants in a cell phone case - pretty inconspicuous really. Perhaps naively I'm thinking nobody will really notice. I'm still learning the science of better control and learning the hard way what happens if one isn't hooked up properly. And I still have to test several times a day. But it's easier... and better. I have pretty good control now, and feel a ton better.

And in the end, that's what counts.

Contributed by Jamie Naessens